Welcome to My Kidney Transplant Blog

If your NEW please take a minute and read the About Me / This Blog Page to the Right ( I updated it Sun. Aug 9th ).

This is My / Our record of dealing with my Kidney Transplant.  Its for anyone interested in my process ( friends / family ) or anyone searching the web.

NOTE : I have a PDF Version of the Entire Blog,  Way easier to read if your new here or are  and really interested, like if you or a family member will be going through the Transplant process.  Leave me a Comment from any Page requesting ther PDF and I’ll Email it to You,   AL

Important Dates :

June 27 / 09  Started this Blog,

July 27/ 09, Transplant date.     click the dates on the calender .

The Rules :

1) I tell it as I see it / Experience it, be it right or wrong, correct /or in error  (not intentional), It’s from My Perspective..

2)  At times it will be rather Graphic / Crude,  Off Balance and I Guarantee You will find Spelling / Grammar Errors.

3) Just because it’s been my experience does not mean it would be yours.  If you’re going through this Don’t Get Freaked by anything here.  Ask Questions of your Doc’s and Read !.   I was not expecting  some of the things I experienced and a little heads up would have been nice. BUT, I now see I didn’t do enough research or asking,  so I take responsibility for that.

Here’s the basic plan for this Blog,  (most recent posts @ top):

1) Pre-Transplant Prep ( July 2009 ),

2) The Transplant Itself  , July 27 / 09  and Hospital  Recovery

3) The Recovery Months, post Hospital,

4)The Meds ( separate page @ right)

My Original Blog about Me / Us  dealing with Failing Kidneys is still here :

http://mydamnkidneys.wordpress.com/

5 Hrs before Surgery,  Ignorance is BLISS ! !

I CAN’T CHANGE THE WIND,  BUT I CAN CONTROL MY SAILS ! !

Oh, The Dog at the top is My Wife and Sons Dog, He did that to himself and would probably have died if not rescued. What a Rahtard.

Please Visit the Organ Donor Registry, Sign Up and Discuss your Wishes with Your Family.

( Scroll Down for the Daily  BLOG Posts )

Legislation Requires a Person to Sign up to be an Organ Donor should you Pass On.     FACTs :

A )  25 % of People on the BC Transplant Waiting List WILL DIE Waiting !

B)   Kidney wait lists are 5 – 8  years or more, on  Dialysis,  which does not give a healthly quality of life, untreated = Death.

C)  Every Effort will be made to Save Your Life Even if You are a Registered Organ Donor.

British Columbia: Go to www.transplant.bc.ca .

Rest of Canada go to :

http://www.transplant.ca/pubinfo_becomedonor.htm,

click the province you live in for info on the Organ Donor Registy.

United States Residents :

USA  > http://organdonor.gov/donor/index.htm

Most Importantly, Discuss your wishes with your Family so there is no confusion or doubt if the unfortunate happens.  It’s a talk that could save numerous lives, making a lasting Legacy.

And Now a Quote  from a Reputable Source  re: Signing Your Organ Donor Card !!

 

Pope John Paul II

 

Latest Numbers

I did my Bloodwork last week.

Creatinine 203 ( I was well hydrated before this one ) .

Hemo  111,   it’s not over 130 like it should be.  I see the doc in a couple weeks.

Weight, 196.6 lb at home 1st thing in the morning, before fluid and in my gotch. A totally repeatable process so it’s not affected by clothing, fluid / diet b4 weigh in and on the same scale all the time.  I like to get rid of the variables.   Btw,  My face is looking a little less puffy lately as well.

Bottom Line = I’m feeling Awesome.

I’ve laid off the working out a bit, starting just b4 christmas due to traveling.  I’ve been feeling ” off ” the last couple weeks .  I know its not work related as in November and December I was quite active and felt really good.   I’ve been battling a bit of a head cold kinda thing for a couple weeks and last weekend was fighting a Flu. I had nausea for a few days as well as some weird feelings across my abdomen in general,  nothing major, and for a day some serious ache’s in the hips area and muscles there.  I was kinda parenoid that I was starting to Reject.  I went for my bloodwork a couple days early to see if there was anything funky going on.   All was OK . 

The possibility of Rejection still floats around my mind daily, I chase the thoughts away as I’m so on top of my Meds and track my weight almost daily ( Weight / Fluid gain is a symptom of a failing Kidney ).  I’m also aware and mark my abdomen any time I feel a sensation anywere near the Incision site to see if there’s a common thread.  I’ve checked with my Dr’s before increasing activity levels and monitor the results when I do.   I think back over the past day(s) < and have looked back Weeks at times > to see if I may have done something to “offend” the new KID .  So you see I do give a shit to put it bluntly ( not that anyone has said they think I don’t ).

Happiness is :

Happiness is :

1 – A good nights sleep without having to take Sleeping Pills.   I only take the pills a couple nights a week if that.   Work and Routine seem to help, I’m also up earlier, 6am, and more active seems good.

2 – A Month of Firm Stools.   My Body ( Guts and Bowels )  seem to have accepted the CellCept.  I can even have a cup of coffee with minimal impact. 

I’m Enjoying Life .

Latest Dr. and Back to Work

5   1/2 months post Transplant  –   Latest Dr, Appt results :

Creatinine  219 was down to 203 , seems to swing in that range.  

The nurse told me to be sure to hydrate well the day before and morning of bloodwork, even fasting bloodwork ,  so if the creatinine is up Hydration is ruled out. I’ve been good at hydration, I will continue,  Hydration one of the best things you can do for a healthy kidney.

hemoglobin = 111 was 117,  still looking for 130 +

Blood pressure is coming down,  134 / 78 ( at home ),  not bad for me.     Keeping the Blood Pressure in check is also Vitally Important for kidney health.

Weight, 91 kg / 200lb ,  ( 197 at home in the morning )  that should start coming down now.

I’m mostly eating a semi  pre-transplant died, easy on the salt and protien, to also take some load off the new kidney.

My Guts seem to have accepted Cell-Cept now, 90 +  % of the time ,  bowels too. I get a bit of Indigestion sometimes, but nothing major.

Tacrolimus shakes are not to bad until I get Excited or tense,  like when playing pictionary or phoning the Insurance company to try to advance the claim for medical travel expenses which I am entitled to and have paid for.

Prednisone dose is coming down. I was at 15 mg in the morning, now  12.5 mg for a month, then another .5mg drop.  Dr. said they have to slowly drop it so you don’t feel crappy as your body adapts to less prednisone and produces its own version, I forget what it is.

I still need sleeping pills a few nights a week.  I usually try  to sleep without, it works sometimes.  I saw a Dr. Oz episode of sleeping pill addiction, I really don’t need that.

Everything else is looking good.  I’m working out a few times a week, kinda took the Christmas break off. I play Racketball quite aggressively once a week as well.

Monday 18th I returned to work ( I’m a maintenance Electrician ).    The insurance company ( the long term disability side of the Insurance co, ) has actually been reasonable to deal with ) proposed a back to work schedule of  2 weeks at 1/2 days,  2 weeks at 3/4 days then full time.  I feel I could return at 95 % speed but I’ll follow their plan to ensure nothing goes wrong.  I just don’t want to lift over 50 lbs to much at first.   The Dr. signed off on this plan and I agree with it as well.   It feels good to be back to a normalish routine.   I was glad to be off work to assist my wife and her business through the Christmas Retail season and Inventory.   My Girl is way too busy ( we’re working on easing it up for her ) .  I definitely will be looking after the home front while back at work.  I’m in the grove now, why wouldn’t I.

Its a New Year – Retrospective time.

Over the Holidays ( and during the 16 hour drive home )  I had a chance to do some thinking about the last few months.  It has been an amazing time.   Here’s what my mind (questionable at times )  came up with.

1) I’ve been given a second chance at life, I really must /  NO, WILL  make the most of it on all fronts. I haven’t been living it to the fullest yet.  Some of that will mean going out of my comfort zone as well as putting others 1st at times I’d rather not.  I also have to force myself to be more positive, it’s way to easy for me to look on the dark side of things, even today.

2)  I DO NOT REGRET GIVING UP A PERFECT MATCH  (” Type – O “  can go in anybody )  KIDNEY from my fit / healthy Brother In law,  and offering it up in the Paired Exchange Program. We talked about it and decided to really turn this gift of organ donation into a double transplant in the  Paired Exchange.  Reasoning : I am Type A Blood, which is Common so I ended up with a good Kidney from someone else’s Type A  donor.  That tough to match person, who has been waiting for years ( and looked very sick & frail )  got that much needed Type O Kidney and a new life as well.  The Paired Exchange program is a true gift of life.  It’s a possibility for anyone who has a donor that is not an exact match. .   SO 6 months after,  I’m feeling Great, Creatinine is higher than optimal ( it coulda ended up that way regardless of which kidney I got.)  but the kidney has changed my / our life so No Problem.   I’d do it the same if given a re-do. BUT, it would have been coolest to actually have my Donor’s Kidney in me.  But BUT,  My Donor IS  the reason I have my life back.  END OF STORY !!!

3)  I’m glad I Blogged this journey. Over the holidays I heard from several people who actually read the gory details and learned more about organ donation.  I’ve also met several people via the blog who are at various stages of  Transplant.   Most seem to appreciate the ” well this is it, warts and all ” approach.  Plus it was the best way for those interested ( family / friends ) in knowing whats going on, it also made it easier for people to ask questions, which I truly don’t mind.

4) I was correct in my mistrust of Insurance Companies motives. I was told by a medical professional that this is typical and consider a claim for medical expenses as a 2 year process.  THIS IS SO TWISTED.  Trying to wear down the people who are sick or recovering, making them waste time and energy to fight for their rightful money.  I had people suggest I over claim / play the game. I didn’t and I’m glad I didn’t, even after being cheated.  I wish Insurance played fair as well.  I can sleep at night, can they ? ( Sadly, Probably)

5)  Now back to the positive.

Dec. 21st, Bloodwork and Back to Work plan.

Well more bloodwork results.

Creatinine, 203  (or 2.30)  Down a couple points,     Hemo  117,  about the same.

My bowels seem to be accepting the Cellcept better, Finally !!.  They’re good 80 – 90 % of the time now, unless I’m running or eat some Bowel abusive food, ie.  Black licorice,  that stuff toasted them even when healthy, but I love it.

Feeling Good.  Conditioning has slowed down a bit, as I feel I overdid it a bit. I have some muscle or scar type weirdness around and above “the Slice”, not always in the same area.  When I feel something weird I take a felt marker and mark my skin at that site,  then I can accurately track it to see if it’s 1 specific spot or random.  If I need to get it checked out It’s all there in black and pink . Yah, thats weird, but it works for me.

Been busy getting ready for Christmas and preping for some Reno’s  / Maintenance at 2 of my Wife’s Stores in Sask.  This will be my 1st big Work test as I’ll be going fairly hard and long days, around Christmas and after new years, to get the work done.  I’m really looking forward to it and working with our partner/co-worker from earlier days on some of the jobs.

I’ve been on the Insurance Co.’s Ass every day for 1 week until I finally got them straightened around.  They alway come up with “just a couple more questions” even after ” OK thats all the info we need “.  A Jaded person might interpret this as a Stall Tactic,  HHHmmmm.

The Insurance Co. (different division) called and discussed a back to work Schedule.  I think it’s more than reasonable and I feel ready.  Basically its 1) See my Nephrologist on Jan. 13 and get him to sign off on the plan which is :

Back to Work ( I’m an Electrician ) Jan. 18, 4hrs / day for 2 weeks then 6 hrs. a day for 2 weeks then Full days.  Only real limit will be a 50 lb. lifting limit.  I’ve done a bit over that a few times with no issues.   I’ll have been off work about 5 1/2 months from the Surgery date and back to full workload at  about 6 1/2 month.  I will still try to hold back a bit,  It will be tough though.

My employer has been awesome about this whole experience.  I’m a lucky guy and work with a great bunch of guy’s,  I’m looking forward to getting back.  I wonder if it’ll improve my sleeping. I doubt it as I’m quite active during the days already, but we’ll see.

My Son and I are driving back to our motherland ( about 1500km / about 900 miles ) for Christmas. About 1/2 is through the mountains.  I’m actually looking forward to it and have a vehicle equipped to do the drive safely, plus no firm arrival time, so it should be good.  My wife flys in to join us after a couple more days of work.  These are the Retail Golden days, so she’s gotta max it out.  The recission hasnt magiclly been fixed yet.

Because I’m a fairly new transplant I contactred the transplant clinic and got a copy of my meds list, a few recent bloodwork results as well as Lab req’s incase something weird goes down while I’m away for about 2 weeks.  I thought that would be a good plan, vs trying to explain everything to some random Dr. at a walk in clinic.

So a big Merry Christmas / Seasons Greeting to you all.  I’ll see some of you in a few days.

Next scheduled post will be about jan. 14 after the Dr. appt.

Kidney Clinic, Wed. Dec 09

Visit went OK,  I’m feeling Good, lots of energy apart from the nights I can’t get to sleep, then I’m tired during the day as anyone would be.

Creatinine is 208  ( or 2.29 ) . It was at 219 last week but has come back.  It seems my Creatinine baseline will be around 205 ish, give or take 10 points .  GFR ( kidney function ) is about 35 % . 

Hemoglobin 115. was 117 last week so unchanged in the last week, but trending up over the last month. 

Potasium 4.8

My conditioning is going well. I’m either treadmill running or doing some 40  – 60 min.  power hikes in the hills behind our house.  I love the hikes, much more fun than walking the sidewalks.  I take my GPS and can input my course on Google earth. It makes it more fun for me.    Crunches and Pushups, dips are improving.  It’s so sad how 3 months of down time really robs your fitness.   My weight is still about 200,  I’m not working on drop it until the new year.

I’m anticipating back to work after my mid Jan. Dr. appt. .  I’m feeling I’ll be ready then and the bank account is screaming  “get back to work !! “.  It’s been an interesting excercise to really pull in the spending, especially as Christmas approaches. But we’re pulling together as a family and things are going well .  I’m waiting on Reimbursement of expenses from our Group insurance plan,  they’re not cooperating. I don’t trust Insurance Companies that are set up to make a profit.  It seems to me like they try to delay payment and get you off the books ASAP.  Also they’re not set up to insure the people who neeed it, just the people that won’t likely use it. That’s our experience a number of times.   You must certainly keep good records / copies and phone them countless times to keep things progressing.  Thats my 2 cents worth.

Update coming Dec. 9th

Update coming Dec. 9th evening after I’ve been to the Transplant Clinic.

Mid Month Bloodwork, Disappointing !

I see the Doc next week.  Went for Bloodwork on Wed. Results

Creatinie, 208,  ( or 2.36 )  ( , previous were 192, 193 , 212 before that, 174 before that )

Hemoglobin   111,  previous have been about the same.

I’m also a little concerned lately when I feel a bit tired during the day ( which was standard for my life pre transplant ) even though I’m sure it’s just that I don’t sleep well most night.  Just paranoid as I feel Good regardless.

I / We are VERY much looking forward to the scheduled Dr. appt next Wed.  I hope we can get some answers, but I’m thinking they’re kinda in the dark as well.   I will even sugest a biopsy if needed as I’d really like to know Whats UP !

I have also been thinking I should be more diligent regarding a real Kidney friendly diet, similar to what I was on during end stage failure.  If My New Kidney is challenged at 4 months, I best be as easy as possible on it to squeeze maximum  years outta the bad boy.

Just a little venty this time,  but thats whats in my head.

AL

3 1/2 months & H1N1

Today I went for my H1N1 and Seasonal Flu shots.  The wait wasn’t to bad,  about 1.5 hrs from entering the line before the clinic opened until I was out the exit  including 10 min. hanging around after the shots.   I’m definitely more actively avoiding germs, hand washing and gargling a couple times a day. My family has also stepped up the germ warfare by washing /  sanitizing when the come home.  The Flu sux at the best of times, let alone with a new “somewhat struggling ” new kidney in a heavily Imuno Supressed body.

Last Labs were 4 days ago,  basically unchanged.

Creatinine @ 193     Hemoglobin  111,    wt  about 200 lb (198 on my home scale)

I’m feeling good with lots of energy, even though I’m sleeping crappy. I also breath a lot louder / flabbier when I sleep (according to my wife ) since the weight gain post transplant.  Most nights I sleep in the guest room as I’m not tired when my wife goes to bed and then I snore/ish and wreck her sleep.  Also unless I take a couple Gravol as sleeping pills (they wont refill my Heavy duty sleeping pills ) I sleep really light and  get up 3 – 6 x a night.  Despite this I’m up at 7 am and ready to go until 11 pm most days.  It’s a huge difference from Pre Transplant days.

I’m still hovering around 200 lb despite what I eat.   I’ve also started working out with decent intensity this week (easing into it). Abs/ Crunchs . . . the first few, especially extended leg raises, have to be done SLOWLY as  there is definitely some pulling of scar tissue internally until I get things limbered up. After that it’s Go Time with no Issues.

I’m running on the treadmill now and it’s coming back fairly quick. I would prefer to be running outside but I can’t run unless I’m close to a toilet. I have to stop 1 – 2 times during the run for Bowel reasons.

Monday’s run I barely made it to the 1 mile mark even with lots of walking breaks.   By Thursday I did 400 meters non stop and the rest of the 1.4 miles with only 30 second fast walk recovery’s.  Friday I took off as I don’t want to overdo it.   I’m planning on playing a game of Racketball with my Son this weekend.  I am still undefeated against him, but he’s been taking lessons and is really improving. He was close to beating me when we played 4 months ago so we’ll see what happens.   I think I’ll have to dig real deep to pull out a “W”.

The Drugs !

Gotta bring get some things addressed when I see the Doc on the 27th.

- I get the shakes a lot lately, possibly more than a month ago. Tacro  is likely the cause the nurse said. I’m wondering when that should subside. I will definitely have to adjust my work style a bit when it comes to doing fine work or “Hot” Electrical troubleshooting.

- Bowels, they’re messed up.  Mostly because of the CellCept I believe.  It’s not a big problem, but inconveinent at times. It’s not to ba / manageable 80 % of the time and the other 20%  is just not cool. It’s  controllable if  I “hurry”.  If this is the way it is forever I’ll take it over tanked Kidneys any time.  I can always drop an Imodium if it’s a bad day and I can’t be close to facilities.  ( but I’m trying to limit “extra” drugs on my chemical soup body” . I am looking forward to getting the Guts sorted out.  Especially If I’m going get back in to running. I have a 10km feeling coming on, feels like a spring 10k.

3 Months Ago !!

Its 3 months since the transplant. It almost doesnt seem real.   

My most recent Clinic was last week.  here’s the Numbers.  I’m now down to Bloodwork every 2 weeks and Clinic’s 1 x / Month.

Weight,  Still 200 lbs,  some Predisone Face going on.  I’m aiming for 190 end of November.

Creatinie, 192  ( 193 previous, 212 before that, 178 before that ).

Hemoglobin stable at 112,  looking for above 130, that should be coming soon.

Blood pressure is a little high at 14o ish / 90 – 96, but I do hit mid 80’s at times.  I have a home blood psi tester and am tracking it at various times to get a good average.  Don’t need higher doses of BP Meds.

The Clinic Nurse said “It’s not all about the Creatinine” as My New Kidney is doing everything else that its supposed to,  Regulating Fluid level in my body, Maintaining Potasium etc at the Normal Levels .  Some people  end up with a higher Creatinie level and do great, so No Worries !!!!

Recovery is going well.  Meds (cellcept) are giving me some GI issues ( mostly Soft acidy ”Stools” at times).  I’m  at 1000 mg,  2x per day. If  GI doesnt settle down they’ll try me on Coated Cellcept, kinda Time Releases, but don’t want to change med’s up much as they’re still watching the Creatinine.  It’s manageable most days. 

 Tacrolomis  ”Shakes” are still there. I’m taking 3.5mg  2x/day.  It’s especially funky when I try to do fine work. This may be an issue when I get back to work as I’m an Electrician who needs to meter live equipment, up to 600 Volts.  Shakes arent an option.

I “Pulled” my incision internally a few days ago, Just Weird !!.  Middle of the night I couldn’t sleep and did a full body stretch while laying in bed, from my toe’s to my arms. Well at Full Stretch I felt a Knife Stab right at my Incision, but inside.  1st time ( since about week 2 ) that I felt that.  It was a bit sensitive for a couple days after that.

Now that I’m past the 3 month recovery window I’m starting to get in Shape. Starting Crunches and Cardio. Tried Mountain Biking up a trail by our house, man am I outta shape, but that’s to be expected.   I still have to watch it, but it feels good to be working out again.

Next update in a couple weeks.